TRANSLATE

Welcome to Our Parkinson's Place

I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's diseases as well and thought it would be nice to have a place where updated news is in one place. That is why I began this blog.

I am not responsible for it's contents, I am just a copier of information searched on the computer. Please understand the copies are just that, copies and at times, I am unable to enlarge the wording or keep it uniformed as I wish. This is for you to read and to always keep an open mind.

Please discuss this with your doctor, should you have any questions, or concerns. Never do anything without talking to your doctor. I do not make any money from this website. I volunteer my time to help all of us to be informed. Please no advertisers. This is a free site for all.

Thank you.

Thursday, June 22, 2017

Scammers selling fake cures for Parkinson's and

A government watchdog caught supplement companies making what appear to be illegal claims in their ads

Nearly one-third of the advertisements for “memory-boosting” supplements reviewed by a government watchdog may be illegally claiming to cure or prevent diseases like Parkinson’s or Alzheimer’s, according to a recent report. The report suggests that government regulation is failing to keep up with the growing supplement industry, but regulators aren’t prepared to actually fix the problem at its root.

“DON'T TAKE YOUR SUPPLEMENTS LIGHTLY.”

Over two months, investigators from the Government Accountability Office (GAO) sorted through memory supplement marketing online, in print, on TV, and in stores. After analyzing 91 advertisements and labels in depth, they discovered 28 ads for 34 supplements that claimed a product could protect against or treat dementia, Parkinson’s disease, or Alzheimer’s disease. That’s illegal; claims that a pill or concoction can treat, cure, or prevent diseases have to be approved by the US Food and Drug Administration.

The dietary supplement industry is massive, raking in an estimated $39 billion in sales in 2015. The portion catering to customers who want to improve their memories is growing — nearly doubling from $353 million in 2006 to $643 million in 2015. Most of the advertising for these drugs is online, the GAO found. And the supplement makers are minimally regulated. Products can hit the shelves without being tested for safety or efficacy, and, often, without their labels being vetted for accuracy. "It’s a challenge to take on an industry that's this large,” says FDA spokesperson Lyndsay Meyer.

"IT’S A CHALLENGE TO TAKE ON AN INDUSTRY THAT'S THIS LARGE.”

The Senate Committee on Aging was concerned that aging consumers might be especially vulnerable to claims that one weird trick could stave off senior moments, so it asked the GAO to check in. The GAO shared the 28 examples it found with the FDA, which agreed 27 of them may have violated the law that generally bars supplement manufacturers from making disease claims.

Healinginabottle.com has expired; an email to the account the FDA used to contact the company bounced, and the company didn't reply to a Facebook message. Stem Cell Therapy Plus' website still mentions Alzheimer's and Parkinson's disease; spokesman Joe Cruz says the company has addressed the FDA's concerns.

Ryan Nadeau, a spokesperson for Lifevantage, noted that the website the FDA discussed in its warning letter, nrf2science.com, is not selling a Lifevantage product — it’s discussing the protein that this product is purported to target. “We definitely agree with the need for transparent advertising and making sure that you stay within the guidelines,” Nadeau says. “I mean you’re talking about diseases — it’s not something you want to con your way into.”

The problem with deceptive marketing is that it could lead people to, at best, waste their money, and at worst, make dangerous health decisions. “Most people believe when they go to the store and they're able to just pick it up off the shelf that this is something that the agency has reviewed for safety and efficacy. Or safety, at a minimum,” the FDA’s Meyer told The Verge. “The way that the framework is set up for supplements in this country — that's just not true.”

“OBVIOUSLY IT’S NOT IDEAL OR OPTIMAL BY ANY MEANS FOR CONSUMER PROTECTION.”

Despite its latest findings, the GAO doesn’t have any big regulatory or enforcement recommendations for the FDA, which oversees supplement labeling, or the Federal Trade Commission, which oversees advertising. Instead, the GAO recommended that the FDA and FTC clarify to consumers “which agency to report concerns to involving Internet marketing.” If this seems like an anemic response, that’s because it is.

“Obviously it’s not ideal or optimal by any means for consumer protection and other issues. But those were the cards we were dealt,” says Seto Bagdoyan, a director of forensic audits and investigations for the GAO. “And that's why we focused on our market research and also on the consumer awareness of these regulators’ respective roles.”

The problems with supplement oversight go back to a 1994 law called the Dietary Supplement Health and Education Act, or DSHEA. Under this law, supplements are regulated as food, not drugs. That means that supplement makers aren’t required to prove their products are safe or effective before selling them. And while manufacturers are typically legally barred from making disease claims on product labels, the FDA generally doesn’t approve labels before supplements hit the shelves.

So the agency can only reprimand companies that it catches breaking the rules. And catching wrongdoers is challenging, because the FDA doesn’t have a comprehensive list of the supplements on the market. “You can have concerns over products and then the products get renamed,” says Joshua Sharfstein, a professor at Johns Hopkins University and former FDA deputy commissioner. “There are so many aspects of this that are out of control at the same time.”

“SOMETHING NEGATIVE HAS TO HAPPEN BEFORE THEY TAKE ACTION.”

In the past, the GAO has suggested that the FDA should come up with guidelines that spell out the scientific evidence companies need to back up claims like "calcium builds strong bones" on a product’s label. The GAO also said that the agency should ask Congress for the power to demand that supplement companies hand over that scientific evidence. Neither of these suggestions were implemented. “They explained to us, once again, that they really are hamstrung in terms of their authorities,” Bagdoyan says. “The focus of their work is at the back end — where something negative has to happen before they take action.”

That’s why the GAO’s recommendation is so unhelpful, especially since most consumers are unlikely to know whether a supplement’s advertising is illegal. Even if it were clearer where consumers should report concerns to, it’s hard to imagine that would make much of a difference. Adverse health events are already massively underreported (consumers and clinicians can report them here at https://www.safetyreporting.hhs.gov/srp2/default.aspx?sid=0eb681f0-ca76-4e06-8481-be336eb41d24

Scientists with the CDC and FDA estimate that dietary supplements are associated with more than23,000 emergency room visitsannually. The FDA estimates that there are over 50,000 supplement-related health incidents each year. And yet only somewhere between 2 and 3 percent of these incidents are reported, according toa 2008 GAO report.

Until regulation of dietary supplements changes, Meyer sums up the bottom line for health-conscious consumers: “Don't take your supplements lightly.”

I
just began writing Poetry for my newest blog: "P0ETRY:LIVING LIFE TO THE FULLEST
WITH PARKINSON'S DISEASE." It is mostly upbeat and sometimes funny. I hope you enjoy it.

I am a wife, mother and grandmother. I was diagnosed in 2004 by a Neurologist and a Neurologist- Movement
Specialist. Going back through my medical records, I had tremors since 1987. I
have dystonia of the feet and calves as well. In 2004, I had a major stroke and
was paralyzed on my left side. It took a year of Physical Therapy to regain 99%
back.

I feel strongly about
spreading the word about Parkinson's Disease as we travel throughout parts of
the United States. My husband Larry, married on August 2, 1966 to my best
friend.been married for 50 plus years. In 1967 he joined the Marine Corps as an enlisted Marine , then became a warrant officer 4 Selective and retired as a Capt serving over 22 years. ( A Mustang). I am fortunate to have the support of my family and friends. I also have a maltese named Spencer who is my Service dog.God has
truly blessed me and I am thankful. Parkinson's Awareness is important to
me. I continue to exercise, meditate and thank the Lord for each day. God Bless our military and their families. God Bless the USA. Semper Fi !

Medical Disclaimer

Medical Disclaimer

No advice

http://ourparkinsonsplace.blogspot.com contains general information about medical conditions and treatments. The information is not advice, and should not be treated as such. I have copied from organizations the information. This is put together strictly to read and you to talk to your medical doctor about. I search on the internet and copy and share the information on my site. IT IS IMPORTANT TO UNDERSTAND I AM A PERSON WITH PARKINSON'S DISEASE. I HAVE NO MEDICAL EDUCATION, I JUST WANT TO SHARE WITH YOU WHAT I READ ON THE INTERNET. IT IS UP TO YOU TO DECIDE WHETHER TO READ IT AND TALK IT OVER WITH YOUR DOCTOR. I AM JUST THE COPIER OF DOCUMENTS FROM THE COMPUTER. I DO NOT HAVE PROOF OF FACT OR FICTION OF THE INFORMATION.

as an alternative to medical advice from your doctor or other professional healthcare providers. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. If you think you may be suffering from any medical condition you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on http://ourparkinsonsplace.blogspot.com

Limiting our liability

You agree not to hold us liable for any damages arising from or relating to your reliance on any of the medical information provided onAdditionally, you agree not to repeat the medical information that you read on http://ourparkinsonsplace.blogspot.comto a third party, as that third party may not have read this disclaimer and understood the caveats involved in receiving the information.

If you should repeat the medical information that you read on http://ourparkinsonsplace.blogspot.comto a third party, whether through writing, electronically, or orally, you agree that you will indemnify us and defend us against any claims for damages by that or any other third party which received its information as a result of your actions, either in whole or in part. In other words, if the third party you told the information to repeats it to another third party, you must indemnify us and defend us against claims made by either of those third parties.